My " Soccer Monster"- or not

Robbie began his first day of soccer today. The group was made up of 6 children ages 3-5 years old. I spoke with the coach a few times prior to today. He seemed slightly uneasy but ok with having an autistic child in the program. I didn't really have a goal in mind before today- I just wanted to see how he handled the situation. I prepared him as best I could- explaining he was going to be a " soccer monster" today just like one his favorite Backyardigans episodes. I tired him and his sister out early at the lake so they would both nap and be refreshed prior to the 5 pm soccer lesson. As I pulled up to the park where the soccer was being held I knew my "preparation" would not have helped. The soccer is taking place in a small park with playground equipment and swings immediately in the vicinity. My friend who had mentioned soccer to me because her 4 year old really enjoyed it last year was also put off by the location. She mentioned that the playground was a definite distraction and last year it was held in an open field.
I watched all the children- with the exception of mine- follow every direction that was given. " sit on the ball like a chicken"- hands behind your back and kick the ball- drills- etc. The coach was clearly uncomfortable with my son. His assistant made a more valiant effort and I explained " My son is Autistic' - which I swear I will have tattooed to my body- ( sorry mom - but I will) and he may not answer to his name right away. If you get directly in his face and force eye contact he will respond. She said thank you for telling me. I was angry that the coach hadn't let her know. Robbie spent the majority of the soccer lesson on the swings- where he feels most comfortable. The coach did invite him in a few times but Robbie was adamant about what he wanted. The coach had told me prior to the class he would refund my money if it didn't work out. At the end of the class he mentioned that he thought I would call him for a refund.

This is what I Know- Robbie sat on the ball " like a chicken sits on an egg"- a few minutes after he was asked to and all the kids where already sitting. The coach gave Robbie a sticker with his name on it and asked him to put it on the front of his shirt. He did it- upside down- but he did it. 2 weeks ago at Robbie's class field trip the sticker with the name tag was a battle. 3 times- finally on his back so he didn't notice. These are small steps- but steps!!
My new goals for Robbie--- He will high five the coach when asked. He will participate in 1 drill. He will watch a portion of the time. The rest is up to him and really for him. If he wants to be on the swings 75% of the time- I'm ok with that. My husband and I had a discussion about this program a few weeks ago. His fear is that Robbie is not ready. I don't disagree with that. My fear is if we don't push him into situations that are tough he'll never be ready. It has taken months for Robbie to sit at circle time in his preschool class- but now he does it. As I told the coach- everything you teach to the other kids will take twice as long for Robbie to pick up. What I really need to tell him is- it's ok if he never picks up most of what you say. I want him to feel comfortable in a new environment and participate a fraction of the time. It he feels ok by the end of the season- next year he may truly benefit from it again. And if not- so what- we tried!!

The most challenging part of this experience is the coach and some of the other parents- ( with the exception of my friend who has been so helpful in these situations- Thank you Kelly if you read this!) They can see Robbie is different from the other kids and are not sure how to respond to him. I feel like I have a duty. My son is autistic- smart, funny, loving, athletic and beautiful- but still autistic. The way he is handled needs to be a little different. The number of diagnosed on the autism spectrum increases every day. 1 in 110 nationally- 1 in 94 in NJ- 1 in 54 in boys versus girls. What is going on? Someone PLEASE find a cure!!!!!!

SLOW progress

Robbie's had a few very busy weeks. He turned 4 years old, had a party, went to a party and had a school field trip. Robbie LOVES his birthday- or really birthday's in general. He had a blast opening presents with Mom, Dad and Lexi and waiting for his cake. He also had a blast at a friends birthday party. It was held at the Funplex- which I refer to as chuck e cheese on crack. He played in the foam frenzy room, rode bumper cars, ate cake and wanted to explore some of the other activities. I saw a parent from the daycare we used to go to. I mentioned Robbie was autistic. She had no idea.

The school field trip was a little more challenging. Garden State discovery museum was packed with multiple field trips. We did our best to get through the day- but honestly it was tough for a lot of the children. I did get to have a conversation with Robbie's preschool teacher. I explained that we feel next year Robbie should be in a full day program. She voiced a few concerns about her school and suggested I look into additional programs. So the search begins!

As the title of this entry states progress has been slow. He makes small gains and then regresses. It's very frustrating- especially as I watch his sister pick up words and phrases at lightning speed. Her vocabulary will out number his within the next few weeks. Simple things like throwing garbage in the trash can instead of the recycle bin. Lexi gets it but every day I have to remind Robbie which is which. The heart breaking part is I see him trying really hard. We play matching games on the computer and I make him name the objects. When he doesn't know the answer he looks at me- waiting for me to tell him. It's the same expression of emotion I remember from my school days. When the teacher called on me and I didn't know the answer or was not prepared. I'd look at them pleading for the answer.

So we continue on- searching for the "right" program. Trying to get more services. Teaching him basics at every opportunity. Hoping he will "outgrow" his diagnosis. Hugging him tight every chance we get :)

"Robbie has a best friend"

While we continue to have ups and downs as far as Robbie's progress is concerned- I have a great up to share. At school recently one of the other mom's told me Robbie was her son's best friend. It was awesome to hear- that he had made a real friend. Rob asked if Robbie knew he had a best friend. Truthfully- I wondered the same thing. I asked the other Mom if she wanted to arrange a play date for the boys. She was thrilled. Her son has a mild form of cerebral palsy, a speech delay, and ADHD. I wondered if Robbie would actually play with another child or play around them. To my delight he was excited when his friend arrived and after a few minutes really did play with him. They ran around the house, ran outside and played on our swing set. The little boys Mom was excited because he said Robbie so often and did not have many other words. They were both looking out of the "telescope" in the play house and Robbie put his hand around the other boys shoulder as they made up their adventure. They went down the slide and Robbie said "come on" to the other boy so he would follow him again. I could have cried. My son had such a big grin on his face all afternoon. He has a friend! :)

The Funplex- or Chuck E Cheese on crack

This past weekend Daddy and Lexi went to a friends birthday party and Robbie and i went to the Funplex. Robbie has been invited to a birthday party there in a few weeks and I wanted to see how he handled it. We walked in to a large room filled with people, noise, lights- pure chaos. I was nervous. I looked down at my little boy and a smile crept on his face. He was excited!! We meet some friends and proceeded to the bumper cars. Robbie's friend ran to get onto the children's bumper cars. Robbie was nervous and stayed with me. We watched for a bit and then he grabbed my hand and pointed to the larger bumper cars. These would fit an adult as well. we waited in line. He was just tall enough- thank you lord!! He picked a car. I drove. He had a blast!! Our friends who were watching could not believe the huge smile on his face as we got rammed by the other cars. (That seemed to be the best part.) When our turn was over- he got out and we walked back over to the kiddie cars. He still was not interested in going on them by himself or with his buddy. We went back into line and waited. He was so good waiting in line. I was proud! we took our turn- had a blast and went on the next activity- snack time! After having a snack- juice box and goldfish crackers- we proceeded to the next thing. It's called foam frenzy. Loud, loud, loud. A million foam balls are flying by your head. there are tons of shooters and a large structure in the middle that shoots ball out in all directions. (Robbie was in kid heaven- and adult hell)

The hard part of the day- the transition to leave. Robbie did not want to leave. He was having fun and honestly we hadn't stayed that long. But as life happens- we had to get home so Dad could scout a basketball game. I gave Robbie the 5 minute warning and the 1 more turn warning. Then I had to physically restrain him and carry him out. (no easy task these days- he's almost 4 years old and wearing 5-6 clothes- big boy!) I did get quite a few looks of horror and pity. But we made it outside, he calmed down and walked to the car on his own.

All in all - it was a great day. Robbie surprised me once again with his ability to handle " chuck E cheese on crack" and his ability to wait his turn. That is tough for any child. We are going to go one more time before the party- preferably on a weekday because Mommy feels overwhelmed on the weekends!!

Wish us luck!

Diet changes

We have kept Robbie on a very strict Gluten free, casein free (dairy), preservative free, artificial color free, high fructose corn syrup free diet for the last 8 months. We did this because after reading a lot of the literature- this course of action is suggested. We felt it was worth a try because it wouldn't hurt him- or his sister. Over the past few weeks Robbie had been helping himself to cheese, bagels, etc. The things that had been off limits. I've been watching closely and making sure he doesn't over eat those things. He seems fine. He doesn't have any bowel issues. His behavior is the same. In fact, I believe he is eating better- probably because things taste better and he feels satisfied. I am still limiting preservatives, colors and high fructose corn syrup but bread and cheese seem to be ok. I bought the deceptively delicious cookbook by Jessica Seinfeld. It tells you to puree vegetables and add them to foods- like mac n cheese and couscous. I tried the one of the recipes on Tuesday. "Yuck, this is gross." Most mothers would be upset by this statement. It was music to my ears. Robbie completed a sentence. Usually he would push the food away if he didn't want it.
He's had a good week in school , has been sleeping through the night, and hasn't asked for the pacifier as much. I hope this is a sign of more good things to come!!! ( And we can all eat Pizza again!!!!!!)

Birthday Parties

We all went to celebrate one of Robbie's cousin's first birthday. We were excited because it was family and Robbie usually does really well with family. As more and more people came to the party- Robbie began going upstairs for longer periods of time. He would stand at the stairwell and become focused on the ceiling-and his ability to touch it from the stairwell. He wanted to play upstairs in his cousin's room, away from the crowd. I wish I could say this wasn't heart breaking for us- but it was. We probably should have expected it- but we didn't. As I watched the other kids walk around and play with toys, I felt sad. My son was upstairs and refused to come down. It also becomes more and more clear how behind Robbie is when I see other "typical" children. I listen to them speak and ask for what they want. I watch them interact with each other so easily and I feel sad. I wish I didn't feel that way.
Another frustration has been with services and diet. How much, how long, what to avoid, what to add. No one can tell you what the correct amount is. It is a huge guessing game. When someone is ill, a doctor can recommend a treatment program or course of action. With Autism Spectrum disorder- the spectrum is so large- there isn't a clear path. I am frustrated. I am sad. I am scared for my little boy. He is making great strides- don't misunderstand. His speech is improving dramatically. His "playing" is appropriate. But, we still have a long way to go.

Temple Grandin

Temple Grandin is a "famous" person who is Autistic. HBO had a movie based on her life which aired tonight. Claire Danes was the actress and what an amazing job she did. Honestly I cried through the entire program. What this woman has accomplished is amazing. But what struck me were the subtle behaviors in Claire Danes "Temple." Watching her try to interact with others and even watching her eat- the very selective things she would. Why is Robbie so selective about what he will eat? Why does he eat 5 apples or 5 oranges at one time? Why does he prefer to sit underneath the table at our local restaurant once he has finished eating? How can we fully engage his extra ordinary senses and aid the ones that are overwhelming?

I feel very lucky that Robbie does not have sensory issues with being hugged and touched as "classic" autistic individuals seem to. He thrives on hugs, deep pressure and hot showers. temple had built herself a machine to administer "hugs" or deep pressure because she did not like to be touched. That must be heart breaking for a parent. The question that is looming in my mind is how much do we push to get him out of his comfort zone? We are working on things that are inappropriate. Holding onto my leg as we walk somewhere as opposed to holding my hand. But do we push for more social events? The birthday parties at chuck e cheese? I find those overwhelming.

I bring this up because "Temple" talks about how she was pushed out of her comfort zone. She was told to picture life as a series of doors and by walking through them you will find opportunities. Autistic individuals are incredibly visual. The door analogy is an excellent example of how to explain situations.